Shealyn was diagnosed with Prader-Willi syndrome at about 1 month old and that’s how we came to learn about Children’s Village.
One of the most common causes of genetic life-threatening childhood obesity, PWS occurs when there is an error on chromosome 15. There are two main stages of PWS: the first stage being hypotonia, poor feeding in infancy, failure to thrive, and delayed motor development due to low muscle tone. The second is hyperphagia, which is an uncontrollable drive to eat with intense food-seeking behaviors and a constant feeling of starvation, even after eating a large meal. Their metabolism is slower and they have to consume fewer calories to maintain a healthy weight.
Other effects of PWS can be short stature if they’re not treated with growth hormone; learning difficulties, and low IQ. They are usually very sweet and loving people, and many other medical issues can occur. In our personal journey with PWS we have been very lucky; it is a spectrum and we have been on the higher functioning side so far. We constantly push Shea and treat her no different than any other child.
When we left the Neonatal Intensive Care Unit, all of the Children’s Village’s services were set in place for us. A dietitian helped with weight checks, nutrition, and calculated calories. A speech and feeding therapist helped with the feeding difficulties. We also had an occupational therapist to help with low muscle tone and helping reach developmental milestones.
As things progressed we’ve had different challenges along the way. As Shea learned to bottle feed and started gaining weight, we no longer needed the dietitian or speech and feeding therapist. We did continue utilizing the occupational therapist, due to her low muscle tone. Shea developed scoliosis around 18 months of age, which is quite common in PWS children, and had to be in a brace for a little over a year. When she turned 2 years old we started speech therapy, and we chose to have this in combination with hippotherapy, which is horseback riding. Because of her scoliosis, horseback riding therapy would help strengthen her core muscles. We did this for a little over a year and her spine has straightened out. She’s gotten stronger and has been brace-free for a little over a year now.
Even with all these things going on with Shealyn, everything is really good right now and we are on cruise control, in our new way of normal.
We do have lots of hope. Hope for a medication that will help with hunger. Hope that someday she can attend college if she would like to. Hope that someday she may be able to live independently and have a job.
I really can’t imagine where we would be today without the help of Children’s Village and its services. With a new diagnosis and the grieving process that goes with that, there is no way that we could’ve managed to get everything set up and to obtain all the care that was needed. Without their help, Shea may not be doing as well as she is right now. It was a very organized process. With the help of our family coordinator, they took care of everything and helped set up all of the services and specialists we needed. We’re very fortunate to have a place like Children’s Village here in Yakima.